Academic paper based on Uyghur genetic data retracted over ethical concerns; The Guardian, December 29, 2023

Amy Hawkins , The Guardian; Academic paper based on Uyghur genetic data retracted over ethical concerns

"The retraction notice said the article had been withdrawn at the request of the journal that had published it, Forensic Science International: Genetics, after an investigation revealed that the relevant ethical approval had not been obtained for the collection of the genetic samples.

Mark Munsterhjelm, a professor at the University of Windsor, in Ontario, who specialises in racism in genetic research, said the fact that the paper had been published at all was “typical of the culture of complicity in forensic genetics that uncritically accepts ethics and informed consent claims with regards to vulnerable populations”.

Concerns have also been raised about a paper in a journal sponsored by China’s ministry of justice. The study, titled Sequencing of human identification markers in an Uyghur population, analysed Uyghur genetic data based on blood samples collected from individuals in the capital of Xinjiang, in north-west China. Yves Moreau, a professor of engineering at the University of Leuven, in Belgium, who focuses on DNA analysis, raised concerns that the subjects in the study may not have freely consented to their DNA samples being used. He also argued that the research “enables further mass surveillance” of Uyghur people."

Roland Pattillo helped keep Henrietta Lacks' story alive. It's key to his legacy; NPR, November 14, 2023

 Walter Ray Watson, NPR; Roland Pattillo helped keep Henrietta Lacks' story alive. It's key to his legacy

"Dr. Roland Pattillo and his wife Pat O'Flynn Pattillo paid for Henrietta Lacks' permanent headstone, a smooth, substantial block of pink granite. It sits in the shape of a hardcover book...

Pattillo, an African American oncologist, stem cell researcher and professor, died in May at age 89. His death went largely unreported. The New York Times ran an obituary last month. The Nation published the news in September...

He protected and elevated Lacks' memory for decades. A Louisiana native, Dr. Pattillo is often described as a quiet, determined man, and a major reason why millions know Henrietta Lacks' story.

He befriended the Lacks family and protected them from reporters and other people. He was aware of the HeLa cell line story, the medical discovery that Henrietta Lacks' cancer cells successfully grew outside her body, but he learned more about the donor when he worked with biologist George Gey, his mentor at Johns Hopkins. Gey was responsible for harvesting her biopsied cancer cells and successfully growing them in culture, the first human cells to do so. They were put to use for medical research in labs around the world...

Henrietta Lacks left behind five young children in 1951.

She was treated at Johns Hopkins, a Baltimore charity hospital that cared for Black patients during the Jim Crow era. Her tumor cells were taken without her knowledge. Her cells became the first successful "immortal" cell line, grown outside her body and used for medical research. They have been instrumental in breakthroughs ever since.

Patients rights and the rules governing them were not like today.

HeLa cells were used to understand how the polio virus infected human beings. A vaccine was developed as a result. More recently, they played a significant role in COVID-19 vaccines.

Pat Pattillo says her husband wanted to share how Lacks' gift benefitted humanity since her death at age 31. But he also hoped to extend empathy for the family she left behind...

Skloot says she and Pattillo first had a mentor and mentee relationship, but it blossomed into a collegial one, especially when they formed the Henrietta Lacks Foundation.

"So, it provides financial support for people who made important contributions to science without their knowledge or consent," she says. "And their descendants, specifically people who were used in historic research studies like the Tuskegee syphilis studies, the Holmes Burke prison studies, and Henrietta Lacks family.""